The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project

The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project

Abstract Background The role of patients in medical research is changing, as more emphasis is being placed on patient involvement, and patient reported outcomes are increasingly contributing to clinical decision-making. Information and communication technology provides new opportunities for patients...

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Bibliographic Details
Main Authors: Nao Hamakawa, Atsushi Kogetsu, Moeko Isono, Chisato Yamasaki, Shirou Manabe, Toshihiro Takeda, Kazumasa Iwamoto, Tomoya Kubota, Joe Barrett, Nathanael Gray, Alison Turner, Harriet Teare, Yukie Imamura, Beverley Anne Yamamoto, Jane Kaye, Michihiro Hide, Masanori P. Takahashi, Yasushi Matsumura, Muhammad Kassim Javaid, Kazuto Kato
Format: Article
Language:English
Published: BMC 2021-02-01
Series:Research Involvement and Engagement
Subjects:
Rare diseases
Patient involvement
Patient-centered research
Patient reported outcome measures
Information technology
Information and communication technology
Online Access:https://doi.org/10.1186/s40900-021-00253-6

Internet

https://doi.org/10.1186/s40900-021-00253-6

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